Under the - ADHD Australia
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The voice of the
ADHD community.
Highlighting the
Gaps and Priorities for
People Living with ADHD
in Australia.
Under
the
ADHD Australia
National Survey report
of Community Gaps
radar
and Priorities
R E P O R T
About ADHD Australia 4 Priority gaps in the ADHD community 30 Priority gaps in managing the cost of ADHD 46
A D H D
Acknowledgments 9 Priority gaps in caring for someone with ADHD 32 Annual spend on ADHD 47
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Foreword 10 Priority gaps in schools 34 Support 48
R A D A R
C O N T E N T S Executive Summary 12 Priority gaps in finding the right medications The impact of COVID-19 49
T H E
and therapies 36
Next Steps 14 In Closing 52
U N D E R
Priority gaps in managing ADHD 38
About The Survey 16 Glossary and Abbreviations 54
Priority areas to focus on 40
Participant Summary 20 General 56
Financial burden 42
Challenges 24
Applying for financial support 44
Priority gaps to address 28
2
4
U N D E R T H E R A D A R - A D H D R E P O R T
A B O U T
U S
5
Who is Our Vision Our Values
R E P O R T
ADHD
Australia?
A D H D
To make Australia a better place for Collaboration Respect Professionalism
people living with ADHD. With an estimated 1 million Australians ADHD is a diagnosis that comes with We will operate in a professional
-
living with ADHD, being collaborative is community judgement and stigma and manner and ensure that we meet the
R A D A R
Established in 2014, ADHD Australia the only way we will succeed. The whole like many mental health conditions is an governance standards expected of us.
is a registered national, independent, is greater than the sum of its parts and area where there is emerging information.
T H E
non-profit organisation, committed we need to work together to create We enter dialogue with respect, and an
to removing barriers to well-being for positive change. This doesn’t mean that understanding that constructive dialogue is Transparency
U N D E R
those living with ADHD. Among the there isn’t room for diversity of opinion the way to change community attitudes. We value open communication. We
key guiding principles of our founding or approach. We all have a role to play are transparent about our successes
directors was to be independent of as the need is great. By working at and failures. We will continue to remain
all existing ADHD bodies, working the intersection between community, Integrity focused on the end goal and the cause.
closely with them to complement government, education, and the health Having integrity means not only knowing,
their existing advocacy and sector, we can reduce stigma and but always doing what’s right – even
community support efforts. isolation and create new opportunities when no one’s looking. As an emerging Accountability
and potential. organisation ADHD Australia has prioritised We are accountable to each other, our
the need to remain positive, but to also supporters and the community to be a
stand up for what we believe is right. balanced voice for positive change.
6 7
How will we undertake Acknowledgments
R E P O R T
the ADHD community
priorities from this gaps
A D H D
ADHD Australia would like to thank all ADHD Australia would like to also We acknowledge the Traditional
survey? those involved in ‘Under the Radar: acknowledge the fantastic assistance Owners of country throughout Australia
-
ADHD Australia National Survey Report: that the ADHD Community Support and recognise their continuing
R A D A R
the voice of the ADHD community’ Groups across Australia undertook in connection to land, waters and culture.
(The Survey). promoting and distributing the web We respect and honour Aboriginal
We aim to create positive public
T H E
links of The Survey to their members and Torres Strait Islander Elders past,
awareness and improved understanding, We had an overwhelming positive through their websites and social present and future. We acknowledge
U N D E R
through evidence-based information, response that resulted in 1,616 media channels. We also wish to the stories, traditions and living cultures
which will reduce the stigma associated individuals completing The Survey, acknowledge Takeda Pharmaceuticals of Aboriginal and Torres Strait Islander
with ADHD. Our focus will be across the which makes the results of our survey whose financial support has enabled peoples on this land and commit to
education and health related areas which statistically significant and has enabled The Survey to be undertaken and building a brighter future together.
will have the greatest positive impact. the gaps for the ADHD community the results analysed, reported and
We will also partner with government to be identified. Thank you to all distributed. We commend this report to our
and other like-minded organisations to participants for your time and grace in stakeholders, government and
fulfill our vision. sharing your experiences of living with ADHD Australia acknowledges the time communities as the voice of people
ADHD. and effort its volunteers, especially its living with ADHD in Australia today.
board members, have given to develop,
collate and project manage the many
aspects of The Survey.
8 9
Foreword ADHD is a common developmental in schools, in the workplace as well as in With sufficient government recognition
R E P O R T
disorder, which for many will last a person’s the home. The Survey also highlighted and support, funding, diagnosis, medical
whole lifetime. Whilst classification of the need for the reduction in the stigma, care, parent and teacher education,
A D H D
ADHD is based on behavioural criteria, across all age groups, which follows a cultural and attitudinal change within the
the disorder is biologically based, with diagnosis of ADHD. wider community, a focus on inclusion,
strong genetic transmission. ADHD results and specific adjustments at school, in the
-
in genuine disability, acknowledged Whilst we have been constantly reminded workplace and at home, we can change
R A D A R
by the educational, legal and medical that there are some negative aspects the trajectory that persons with ADHD face
communities. related to living with ADHD, we must also and achieve better life outcomes for those
T H E
make the public aware that there are with ADHD and their families.
What is of no surprise, for many living with some aspects of ADHD that are positive.
U N D E R
and those working within the ADHD space, At ADHD Australia we will continue to On behalf of all stakeholders in the ADHD
is that the ‘ADHD Australia National Survey promote a balanced, and evidence based, community and the ADHD Australia board, Len Russell
Report: the voice of the ADHD community’ view highlighting both the negative as well we support the findings of The Survey MLS, BBus, PGCMngt, CFRE
(The Survey) confirms the need for as the positive aspects of living with ADHD. and will be using the results, with further CEO, ADHD Australia
those living with ADHD to be more fully funding, to focus on what ADHD Australia
understood as individuals, and the need will be undertaking as priority projects Professor Michael Kohn
for more supports to be made available in the coming years. We will continue to MBBS (UNSW), FRACP, PhD (USyd)
advocate for positive change. Chair, ADHD Australia
10 11
• The need for schools to truly one difficulty in regards to ADHD was the
accommodate, empathise with and everyday living challenges of living with
understand children with ADHD, to help the condition (60.3%). These included,
them meet the unique challenges they face. but were not limited to, the challenges
Parents’ top priority in caring for someone of living with one or more co-existing
with ADHD was getting support such as condition, dealing with the impact of
Executive Purpose Key Findings • The cost of life of living with ADHD.
R E P O R T
from schools, doctors and others. There ADHD on employment, the impact of
The ‘ADHD Australia National Survey The Survey was designed to establish Respondents cited that ADHD had a “huge
Summary Report: the voice of the ADHD community need and priority in the areas financial cost”. Financial burdens ranged
was also a need to better equip teachers,
schools and other parents to support a
ADHD on social and relationship matters,
and the impact on the family unit. These
from medication and medical related
A D H D
community’ survey and report (The of overall challenges and gaps for the child with ADHD and understand ADHD- challenges were exacerbated by a lack
services to managing additional school
Survey) aims to identify and clarify ADHD community, carers, school, finding related behaviour. Participants believed of awareness and understanding in the
costs for children with ADHD. There were
the key issues faced by people living the right medications and therapies, that children with ADHD need support general Australian population about
About ADHD
-
also implications for earning power and
with ADHD at all levels, geographically managing ADHD, adults with ADHD. It in dealing with their mental wellbeing the ADHD community and their needs.
R A D A R
Attention Deficit Hyperactivity spending due to ADHD affecting work,
and demographically, and their carers, also explored the financial burden of (74.8%) and help with developing social Addressing other people’s understanding
Disorder (ADHD) is a complex neuro- and the impact of ADHD on financial skills
to provide ADHD Australia with the ADHD and the impact of COVID-19 for skills and friendships (66.1%), alongside of the impact of ADHD was a priority gap
developmental disorder which like budgeting. Average annual spend on
T H E
foundation on which to build a strategic families with a child with ADHD. the school resourcing to support the child to address for The Survey participants
affects a person’s ability to exert ADHD ranged from $2,188.81, for young
academically (65.8%). The challenges of (70.7%).
work plan and guide engagement. Among many priorities, three key areas
U N D E R
age-appropriate self-control. It is people with ADHD (under 26), and went
ADHD can continue into adulthood, so
characterised by persistent patterns of of concern stood out in The Survey as high as $6,672.45 for adults with ADHD
support for these children could have a Funding is essential to establishing
inattentive, impulsive, and sometimes results: and a child with ADHD. While bearing this
lasting impact on their future lives. all three priority areas above. Funding
hyperactive behaviour, and is frequently Survey Participants financial burden, the ADHD community
for families of children with ADHD and
accompanied by emotional regulation In 2020, 1,616 respondents participated in currently cannot seek support from the
• The need for awareness and individuals with ADHD; funding school
The Survey, representing a wide range of NDIS, as it does not fund ADHD as a
challenges. While commonly thought understanding of the challenges
primary disorder, though funding may be support and resourcing; and funding
of as a childhood condition, affecting ADHD community perspectives. The three people at all ages with ADHD face in
received for a coexisting condition. to raise awareness of ADHD.
4%–7% of children, ADHD affects about primary groups were parents of children day-to-day aspects of work, social
2.5% of adults as well.1 with ADHD 54.4% (879), adults with ADHD and family life.
18.1% (293), and adults with ADHD and a Many participants called out the stigma
child with ADHD 14.7% (238). that people with ADHD face on a daily 1. Katzman MA et al. BMC Psychiatry 2017;17:302. (Katzman
basis, in various aspects of their lives. For 2017 - pdf p2, c1, para3, line1 - pdf p2, c2, para2, lines1-2
all of The Survey participants, the number
12 13
Next Steps
R E P O R T
A D H D
ADHD Australia are utilising these, and It is our hope that the information
other, findings to shape its strategic brought to light through The Survey will
-
work plan for the next three to five be of continual benefit to the ADHD
R A D A R
years, as well as guide engagement, community, by highlighting the need for
communications and lobbying. While greater support, research, acceptance
the work plan will build from The
T H E
and understanding from the general
Survey results, this report will assist in public, parents and teachers, the
U N D E R
communicating the community needs healthcare professional community, and
and priorities with corporates, individual the Australian Government.
and Government to garner support and
further our cause.
14 15
U N D E R T H E R A D A R - A D H D R E P O R T
16
T H E
S U R V E Y
17
Methodology This report
About Participants ADHD Australia drew on a number of groups This report contains an executive
R E P O R T
In 2020, 1,616 respondents participated to create The Survey’s set of questions. summary, and a summary of findings
The Survey in The Survey, representing a wide range Many of those who assisted have lived for various subgroups of the participant
A D H D
of ADHD community perspectives. experiences of ADHD, include a number of cohort. Not all respondents answered
The primary groups were My child has clinicians as well as selected individuals who all survey questions; percentages are
Survey quotes
ADHD 54.4% (n=879), I am an adult with have a direct and personal lived experience calculated for the total participants
-
Background This report includes direct quotes from
ADHD 18.1% (n=293), I am an adult with and understanding of ADHD. The Survey belonging to the group/subgroup. Care
R A D A R
The Survey aims to identify and clarify The Survey open-response questions
ADHD and have a child with ADHD 14.7% was open to responses for a three-week needs to be taken when interpreting
the key issues faced by the ADHD throughout, to provide a more personal
(n=238), I am a young person with ADHD period commencing 4th June 2020 and and generalising the results for certain
community at all levels geographically
T H E
perspective on the themes discussed.
(under 26) 4.3% (n=69) and I am a health concluding on 24th June 2020. The Survey States and/or Territories and subgroups
and demographically. The Survey and These quotes are the personal opinions
professional working in the area of ADHD link was distributed to various ADHD support (e.g. Aboriginal and Torres Strait
U N D E R
this report are designed to establish of people in the ADHD community and
3.1% (n=50). groups throughout Australia (as listed on Islanders) due to the small sample size.
community need and priority to provide were not modified, except to remove
the ADHD Australia Supporter website The majority of survey participants
ADHD Australia with the foundation on identifiable terms.
which to build a strategic work plan for
Areas of focus page, adhdaustralia.org.au/resources/ were parents of children with ADHD,
The Survey was designed to establish support-groups/) and then forwarded via and therefore this perspective may be
the next three-to-five years as well as
community need and priority in the areas their respective online channels, such as over-represented in the results of the
guide engagement, communications
of overall challenges and gaps for the Facebook, and through their direct emails to cohort as a whole. We recognise that
and lobbying.
ADHD community, carers, school, finding their members/subscribers. ADHD Australia the measures in this report reflect only
the right medications and therapies, directly promoted The Survey though its part and not the whole story of the
managing ADHD, adults with ADHD. It own Facebook page, via direct emails to challenges facing the ADHD community,
also explored the financial burden of its newsletter subscriber base as well as and represent the accumulation of self-
ADHD and the impact of COVID-19 for listing an article and link to The Survey on its reported impressions.
families with a child with ADHD. website.
18 19NT
0.9% (14)
Participant 54.4% (879) Where were
R E P O R T
My child has ADHD
QLD
Summary participants 14.4% (232)
A D H D
Table 1 Adult with ADHD 18.1% (293) from?
WA
-
Table 2 / Chart 1
14.7% (238)
R A D A R
Adult with ADHD and have a child with ADHD
15.3% (247)
T H E
Young person with ADHD (under 26) 4.3% (69)
NSW
U N D E R
44.0% (711 )
Health professional working in the area of ADHD 3.1% (50)
Capital or major city 70.5% (1,139) SA
3.7% (60)
ACT
Other participants (5.4%) in The Survey Regional 27.9% (451) VIC 3.0% (49)
included teachers, grandparents of
children with ADHD, family members
16.8% (271)
and other advocates of the ADHD Remote 1.6% (26) TAS
community. 2.0% (32)
20 2126 - 45
years old
60.8%
Participant
R E P O R T
Profile
A D H D
Chart 2
46 - 65
-
Do not wish years old
to disclose
R A D A R
Non-binary 0.4% (6) 30.1%
1.2% (20)
T H E
19 - 25 65
years old plus
U N D E R
Male 4.1% 13 - 18 2.4%
12.3% (199) years old
2.6%
As a separate subgroup of the participants we
acknowledge participation from Aboriginal and/or
Torres Strait Islander community of 2.8% (45)
Female
86.1% (1391)
22 23“…There needs to be awareness
that it’s not just a childhood
issue but follows many people
What is most difficult? into their adult life.”
Challenges
R E P O R T
Participants were asked to choose the
top three things that have been the most
difficult for themselves in regards to
A D H D
ADHD.
-
R A D A R
T H E
U N D E R
Young people with ADHD
“…People not understanding Adults with ADHD (under26)
Four in five (79.9%) adults with ADHD Similarly, more than four in five (84.1%)
how varied the symptoms selected everyday living challenges with of young people with ADHD selected
are and how they impact ADHD as a top difficulty for themselves. everyday living challenges with ADHD as
More than three in five (65.2%) chose a top difficulty. With about half choosing
every area of life and just work being impacted by ADHD and work being impacted by ADHD (53.6%)
how hard things can be.” 40.6% chose the financial cost of ADHD. and finding the right medications and
therapies (49.3%).
24 25Aboriginal and Torres Strait Top dificulties in regards
R E P O R T
Islanders
Difficulties for Aboriginal and Torres Strait to ADHD for all participants
Islander participants in The Survey were
A D H D
Chart 3
consistent with the overall participant
cohort with their top three difficulties
-
being everyday living challenges with
R A D A R
ADHD (64.4%), schooling a child with
ADHD (60.0%) and finding the right
60.3%
T H E
medications and therapies (53.3%).
53.8%
U N D E R
40.3%
Carers of children 37.0%
with ADHD
“There needs to be more 30.4% 27.9%
Nearly three quarters (74.4%) of parents education around ADHD and the 25.3%
of children with ADHD thought schooling
a child with ADHD was their most difficult
various symptoms, how it effects
challenge. Coming neck-and-neck for day-to-day living and how it effects
the second and third on their list were
education. Because it effects so
everyday living challenges with ADHD
(53.0%) and caring for or living with many more children than autism, Every day
living
Schooling
a child with
Finding
the right
Caring for
or living with
The financial
costs of
The steps
to get a
Work being
impacted by
someone with ADHD (52.2%).
it should be legally and socially challenges
with ADHD
ADHD medications
and
someone with
ADHD
ADHD diagnosis ADHD
considered a disability.”
theraphies
26 27U N D E R T H E R A D A R - A D H D R E P O R T
28
P R I O R I T I E S
29Priority gaps Priority gaps in the ADHD “…I wish Priority gaps to address in the ADHD
R E P O R T
community
to address Participants were asked to choose the people had the community for all participants
top three priority areas to focus on in
information to
A D H D
Chart 4
regards to the ADHD community.
understand it”
-
Priorities were relatively consistent
R A D A R
between participant subgroups (young
73.9%
“Understanding is
70.7%
person with ADHD, parent of a child
something that we don’t
T H E
with ADHD, etc.) with the exception of
73.9% healthcare professionals working in the
have. Public, professionals,
U N D E R
area of ADHD. For this group, their three 47.6%
highest priorities in the ADHD community 42.1% school staff. School staff
34.5%
Most participants believe
were Education on ADHD for patients,
carers, doctors, educators etc. (74.0%),
don’t appear to have any
education on ADHD for getting support to move from childhood basic knowledge and
patients, carers, doctors to teenage to adult services (64.0%)
often escalate children to
and educators needs to and making it easier to get an ADHD
be addressed. assessment or diagnosis (64.0%). point of meltdown”
Education Other Getting support Making it easier Understanding
on ADHD people’s to move from to get an ADHD of medications
for patients, understanding childhood to assessment or and other
carers, doctors, of the impact of teenage and diagnosis treatments
educators etc ADHD adulthood by the ADHD
services community
30 31“I feel there isn’t enough support or
Priority gaps Priority gaps to address in
R E P O R T
training for teachers or [School
in caring for caring for someone with ADHD
as determined by parents with Learning Support Officers] in schools
someone
A D H D
a child with ADHD for ADHD or behaviour and education
with ADHD
of the effects of medications. I find kids
-
Chart 5
Parent of child
R A D A R
Parents with a child with ADHD and
with ADHD
with ADHD quite often get ignored or
put in the too hard basket. Sometimes I
Adult with ADHD
Parents with ADHD and a child with and a child with
T H E
ADHD
ADHD were asked what they believe the
feel there needs to be a separate style
U N D E R
three priority areas to focus on in caring 73.6% 73.4%
for someone with ADHD. Priorities were
71.4% 69.4%
63.4%
of learning and school for ADHD. More
relatively consistent for these groups, 59.2%
although dealing with ADHD-related 48.7%
cross communication between medical
behaviour was a lower priority (59.2%
45.6% 44.5%
professionals is needed and more
vs 73.4%) and managing structures
and routines a higher priority (44.5% vs
28.8%
advice, respite and education for
28.8%) for the adults with ADHD and parents struggling are needed.”
a child with ADHD compared to the
parents of a child with ADHD.
Getting support Dealing with Dealing with Dealing with Managing
(for example, ADHD related the impact other people’s structure and
from schools, behaviour on the family expectations routines
doctors and unit, including of your child
others) looking after or partner with
yourself ADHD
32 33Nearly
9 in 10 8 in 10 “Social groups
are needed for
kids to learn
Priority gaps Younger people with ADHD Health professionals working Priority gaps to address in
R E P O R T
(under 26) believed we should in the area of ADHD think how to interact
in schools focus on ‘dealing with the we should focus on ‘the way
schools in schooling children
with ADHD for all participants appropriately. And
mental wellbeing of a child schools deal with behaviours,
A D H D
Participants were asked when it comes
with ADHD in schools’ (89.9%). including rewards and Chart 6 all the way through
consequences’ (78.0%).
schooling.”
-
to schooling a child with ADHD, what
R A D A R
the three priority areas were to focus
on in schools. Priorities were consistent
amongst most groups, with dealing
74.8%
T H E
with the mental wellbeing of a child with 66.1% 65.8%
59.8%
U N D E R
ADHD chosen as a paramount priority
(74.8%).
“Impact on child’s 10.7%
confidence, social skills
and emotional wellbeing is Dealing with
the mental
Helping the
child develop
That schools
have the
The way they
deal with
Financial cost
of schooling
so important, importance wellbeing of
a child with
social skills,
friendships and
resources
to support
behaviours,
including
for a child
with ADHD
of a mentor”
ADHD playground my child rewards and
skills academically consequences
34 35“There does not seem to be easy
access to doctors for example
Priority gaps Priority gaps to address my [young adult] son is currently
R E P O R T
in finding in finding the right
medications and therapies
experiencing what I would call a
the right
A D H D
for all participants crisis and is spiraling out of control,
medications he has way too much going on in
and therapies
-
Chart 7
his life and is burnt out. He doesn’t
R A D A R
78.2% recognise this so he’s reluctant to
70.9%
T H E
Participants were asked what the priority
areas to focus on in finding the right
seek help. However, it’s difficult to get
U N D E R
medications and therapies. The majority a referral and or an appointment for
47.6% 44.9%
(78.2%) believe we need to focus on
improving access to psychologists and 36.9% him to be seen, the wait period for
other therapists to help with behaviour. an appointment can be 2–5 months,
This is even more of a priority for
with a psychiatrist or psychologist.”
health professionals working in the
area of ADHD (86%). Compared to the
entire participant cohort, more young
people with ADHD (under 26) think we Access to Access to Educating Information Availavility of
psychologists ADHD medical parents on on ADHD alternative
should focus on information on ADHD
and other specialists ADHD and medications, therapies (diets,
medications, including the pros and cons therapists possible including the supplements,
to help with treatments pros and cons brain training,
(60.9% vs 44.9%). behaviour etc)
36 37Priority gaps Priority gaps to address Other
R E P O R T
in managing “Most patients with ADHD have
in managing ADHD for all
participants
Conditions
ADHD Table 3
A D H D
other mental health issues, which Chart 8
are compounded by ADHD, which is
-
Participants were asked what the
compounded by additional issues,
R A D A R
three priority areas in managing 81.8% The most common conditions that people with ADHD reported,
ADHD were to focus on. Across
etc. My biggest challenge has been 75.3% or parents reported on behalf of their child with ADHD, in this survey were:
65.2%
T H E
all groups, managing different
co-existing conditions was the accessing/finding psychologists or 1) Anxiety / generalised anxiety disorder (31.1%, 502)
U N D E R
top priority (81.8%). This was an
counsellors who treat co-morbid 2) Autism spectrum disorder (20.5%, 331)
even higher priority for health
conditions (eating disorder and past
professionals working in the area
23.0% 3) Depression (11.8%, 190)
of ADHD (96.0%). Uniform laws on trauma) who have specialised in a
medications across state borders 4) Dyslexia / dysgraphia / dyscalculia (11.1%, 179)
was more important to adults with treatment modality outside of CBT
5) Oppositional defiant disorder (9.6%, 155)
ADHD compared to the rest of the talk therapy AND have significant
participant cohort (35.2% vs 23.0%). Managing Managing Communication Uniform laws
Please note that some people with knowledge/understanding of ADHD, different
co-existing
learning
difficulties
between
treating health
on medications
across state
ADHD had several other conditions specifically ADHD medications.” conditions
(eg anxiety,
professionals borders Studies show that 70% of those with ADHD have at
they lived with. depression or least one other coexisting condition2.
bi-polar)
Spencer T et al. Pediatric Clinics of North America 1999;46(5):915–927.
38 39“The stigma of ADHD
discourages letting
people know. Work and
Priority areas Dealing with the impact on employment 57.7% Employment of
R E P O R T
adults with ADHD relationships are made
to focus on difficult due to not feeling
Managing social and relationship matters 56.3% Chart 9
A D H D
Table 4 comfortable disclosing and
Casual Worker,
University/
yet the right information and
-
University/TAFE/
Adults with ADHD were asked what their Improving your organisation skills TAFE/college
college Student
53.9%
Student
R A D A R
three priority areas to focus on. (staying organised) Unable
to work 3.4% 2.0% understanding would make
4.4% a massive difference”
T H E
Self-esteem and feeling good about yourself 54.9% Unemployed
U N D E R
& Seeking Work Employed
Full-time
Getting help from medical and associated 13.3% 34.8%
professionals, adult education providers,
workplaces, community etc. 49.8% Not working &
Not seeking
Paid Work
Dealing with legal issues 4.4% 2.4% “[We need]
Casual
Worker
Flexible working
4.4% arrangements
Self-employed
to help manage
Employed
7.5% Part-time ADHD”
Other 11.6%
16.0%
40 41U N D E R T H E R A D A R - A D H D R E P O R T
42
B U R D E N
F I N A N C I A L
43“[We need] for ADHD to
be acknowledged and
accepted as a medical 1 in 70
condition and allow
Applying Have you applied and allocate funds to
R E P O R T
More about those who did
for financial for funding for
yourself or someone
support people who Only 1 in 70 (1.4%) adults
with ADHD receives financial receive NDIS funding
support have ADHD as it has a
A D H D
support from the NDIS* Looking more particularly at those who
with ADHD? had received NDIS funding, only 1 in 20
huge financial cost” (14.8%) parents of children with ADHD
Chart 10
-
Participants were questioned about their had received funding for issues related
R A D A R
financial support and burden. When to ADHD, for their child.*
YES *
asked if they had applied for funding
20.3%
T H E
for themselves or someone with ADHD, This was ten times more than the
number of adults with ADHD who had
U N D E R
the vast majority (79.7%) had not. This
was even more evident for young adults received NDIS financial support for
with ADHD (under 26) and adults with “Paediatricians and doctors themselves (1.4%).*
ADHD (95.7% and 93.5%, respectively).
Health professionals working in the area
[should] provide information about
NO
of ADHD had the most experience of all
79.7%
support groups, access to funding Special Note
*NDIS does not fund ADHD as a primary
with applying for financial support, with NDIS, health care plans etc., it is disorder. Funding may be received for a
40% having applied in the past.
only through my work with therapy coexisting condition.
The most popular reasons for not applying: services and completing this
• I’m not eligible / not applicable
service that I realised that financial
• I didn’t know I could
funding could be sought”*
44 45“My son is now in Year 11. The
7 in 10 school system, both public and
private, have never provided
support. I had to pay to have a
Priority gaps Priority gaps to Aboriginal and Torres Strait
Annual spend Participants were asked to
R E P O R T
support teacher in class… I spent
Islander participants prioritise estimate their annual spend
in managing address in managing
the cost of ADHD for
‘accessing NDIS and other on ADHD on ADHD.
thousands of dollars taking my son
the cost of financial support.’ (71.1%) to different counsellors but their
A D H D
all participants
ADHD Chart 11
Table 5 The average amounts were:
professional, educated knowledge
-
of ADHD, was not helpful…”
R A D A R
Participants were asked their top three
priorities in managing the cost of ADHD. Most 62.7% I am an adult with ADHD and have a child with ADHD $6,672.45
57.7%
T H E
important to the participants was managing
44.3%
U N D E R
the costs of medical and related services
and medication (62.7%) with accessing My child has ADHD $5,543.69
NDIS and other financial support also highly 34.0%
important (57.7%). When looking at variation 27.0%
23.1% 22.5%
from the overall cohort: managing finances I am an adult with ADHD $3,401.01
(like spending and budgeting) was much
more important to young people with ADHD
(56.5% vs 27.0%); managing the costs of the I am a young person with ADHD (under 26) $2,188.81
impact of ADHD at work was important to
adults with ADHD (50.5%); and managing the Managing Accessing Managing Managing the Managing Managing the Managing
the costs NDIS and additional additional costs finances (like financial costs the costs of
financial costs of ADHD on relationships was of medical
and related
other financial
support
general costs
for children,
of schooling
for a child with
spending and
budgeting)
of ADHD on
relationships
the imapct of
ADHD at work
I am a health professional working in the area of ADHD $2,548.08
more important to participants in SA (35.0% services, and including ADHD
medication additional
vs 23.1%).
support and
education for
parents
46 47Negative and Positive responses to the impact which
the Covid-19 lockdown had on adults and children
Table 7
Support 63.8% NO YES
R E P O R T
Doctors and other health professionals Survey question asked:
RESPONSE RESPONSE
Table 6 Children have done well in homeschooling 59.2% 36.6%
Find it hard to get support 34.4%
A D H D
Children’s anxiety increased 40.8% 52.4%
Participants were asked what their three Family and friends 34.0% Adult’s anxiety increased 18.7% 64.7%
-
best sources of support for ADHD were:
R A D A R
Facebook groups 33.6% Children’s behavioural issues increased 43.5% 51.2%
Children’s behavioural issues decreased 62.2% 29.1%
T H E
ADHD support groups 31.9%
Children want to take meds 30.7% 51.6%
U N D E R
Website information 29.1% The impact Adults want to take meds 17.2% 15.6%
Does not get any support 10.9%
of COVID-19 Children seem/are more depressed 54.9% 34.4%
Parents of children with ADHD were
Adults seem/are more depressed 25.8% 38.6%
5.0%
asked about the impact of COVID-19 on
Other social media
their family during the lockdown period. Children seem happier than usual 58.1% 32.8%
Responses were highly variable, with
Traditional media 0.4% some families thriving under the new
Adults seem happier than usual 53.4% 12.2%
conditions and others struggling harder Adults have often felt overwhelmed 11.5% 68.5%
than ever.
Please note that not all parents answered, thus totals will not add up to 100%.
48 49“It’s been a living hell “The children suffered more anxiety as
The impact of COVID-19 with no escape or there was more written and reading
support I’m mentally 3 in 10 work and less visual learning. The work
exhausted.” was not structured enough and only
R E P O R T
29.1% of children with ADHD had Zoom (face to face) interaction
1 in 2 had decreased behavioural
issues in the COVID-19 once a week.”
A D H D
lockdown
-
59.2% of children with
R A D A R
ADHD did not do well in
homeschooling.
T H E
7 in 10
U N D E R
“Seem to have more
68.5% of parents of children control over ADHD 5 in 10
“Remote schooling was so with ADHD felt overwhelmed
much better - children could work in COVID-19 lockdown. behaviour as he seems
in own time and space at their better while we are
own pace. They also had access around at school they 52.4% of children had
increased anxiety in COVID-19
to 1 on 1 (me) to help scaffold don’t seem to control lockdown
and explain instructions.” his behaviour as much.”
50 51Funding is essential to establishing all
three of the above. Funding for families
of children with ADHD and individuals
with ADHD to help them financially meet
the costs of living with ADHD; funding
school support; and funding to raise
In Closing
R E P O R T
awareness of ADHD. Ironically, The
Survey also exposed significant gaps in
funding.
A D H D
ADHD Australia aims to make Australia
Three key areas of concern
a better place for all people living with
stood out in The Survey:
ADHD Australia are utilising these, and
-
ADHD and their carers. The Survey other, findings to shape its strategic
R A D A R
• The cost of life of living with ADHD.
provides us with the voice of the work plan for the next three to five
community, bringing to light the issues years, as well as guide engagement,
• The need for schools to truly
and concerns they need more help with.
T H E
communications and lobbying. ADHD
accommodate, empathise with and
Armed with these insights, we can now Australia is keen to ensure future work
U N D E R
understand children with ADHD, to
focus our organisation’s efforts directly plans are embedded in the needs of
help them meet the unique challenges
on the priorities of the ADHD community, its community and build strategically
they face.
itself. over time to ensure a sustainable and It is our hope that the information
consolidated approach to achieving brought to light through The Survey will
•The need for awareness and
improved outcomes for those living with be of continual benefit to the ADHD
understanding of the challenges
ADHD. While the work plan will build from community, by highlighting the need for
people at all ages with ADHD face in
The Survey results, this report will assist greater support, research, acceptance
day-to-day aspects of work, social
in communicating the community needs and understanding from the general
and family life.
and priorities with corporates, individual public, parents and teachers, the
and Government to garner support and healthcare professional community, and
further our cause. the Australian Government.
52 53Cognitive behavioural therapy (CBT):
A form of psycho-social intervention
that aims to improve mental health. It
has been demonstrated to be effective
Glossary and
R E P O R T
for a range of problems including
Dysgraphia: A term referring to the Generalised anxiety disorder (GAD): National Disability Insurance Scheme
Abbreviations depression and anxiety.
language-based difficulties involved in Excessive anxiety and worry, occurring (NDIS): Funding scheme for eligible
A D H D
constructing meaningful and effectively more days than not for at least six Australians who have permanent and
COVID-19: The infectious disease
structured expressive writing and months. Worries are often about a significant disability.
Attention-Deficit / Hyperactivity caused by the most recently
ongoing weaknesses in spelling and variety of minor issues and events that
-
Disorder (ADHD): A mental health discovered coronavirus. This new virus
punctuation that affect a student’s are unlikely to occur. Generally, the Oppositional defiant disorder (ODD):
R A D A R
disorder that can cause above-normal and disease were unknown before
capacity to express their ideas with worries are future oriented – about A repetitive and persistent pattern of
levels of hyperactive and impulsive the outbreak began in Wuhan, China,
clarity. what might happen rather than what opposition, defiant, disobedient and
T H E
behaviours. People with ADHD may in December 2019. COVID-19 is now
is happening. Even when there is no disruptive behaviours towards authority
also have trouble focusing their a pandemic affecting many countries
Dyslexia: A type of specific learning cause for alarm, a person with GAD figures persisting for at least 6 months.
U N D E R
attention on a single task or sitting still globally. Australia has implemented
difficulty (SLD) in which the person might worry about health, finances,
for long periods of time. Both adults various community restrictions to
has difficulties with language and family issues, and work or study
and children can have ADHD. prevent the spread of COVID-19, such
words. The term dyslexia, although performance.
as “social distancing”.
still used by some, is generally felt to
Autism spectrum disorder (ASD): A
be too narrow and SLD is often used Intelligence quotient (IQ): A total score
complex developmental condition that Dyscalculia: A term referring to a
to describe these learning difficulties. derived from a set of standardized
involves persistent challenges in social wide range of difficulties with maths,
This is because the learning difficulties tests or subtests designed to assess
interaction, speech and nonverbal including weaknesses in understanding
are usually broader than just reading human intelligence
communication, and restricted/ the meaning of numbers, and difficulty
difficulties; most people with SLD also
repetitive behaviours. The effects of applying mathematical principles to
have difficulty with spelling.
ASD and the severity of symptoms are solve problems. Dyscalculia is rarely
different in each person. identified early.
54 55The voice of the
This report is has been prepared ADHD community.
by Saatchi & Saatchi Wellness and Highlighting the
Gaps and Priorities for
designed by Francisco Neto from
People Living with ADHD
information which was gathered as part
in Australia.
of ADHD Australia’s community survey
in June 2020. This report is intended to
highlight and give insight into the gaps
and the needs of the ADHD community
within Australia at a specific point in time.
Correspondence should be directed to
www.adhdaustralia.org.au
ADHD Australia National Survey Report:
Under
the voice of the ADHD community
This report should be cited as:
ADHD Australia Limited (2020),
‘ADHD Australia National Survey Report:
Highlighting the Gaps and Priorities of ADHD within Australia
the voice of the ADHD community’
the
ADHD Australia
National Survey report
of Community Gaps
radar
and PrioritiesYou can also read
